How I Found My Long-Lost Energy

As a 24-year veteran fibromyalgia patient, I became accustomed to not having much energy. For many years the fatigue was so bad, most days it was a struggle just to get out of bed. Then a few years ago, I began taking Ubiquinol (CoQ10) and NADH. They helped quite a bit, increasing my energy levels enough that I was able to continue supporting myself by working from home on a computer. But doing that work took up just about every ounce of energy I had gained. There was very little left over to do much else.

Then a little over a month ago, a new fibromyalgia study caught my eye – “High-dose thiamine improves the symptoms of fibromyalgia.” It was a very small study conducted by a group of reachers in Italy. In fact, the study was so small – only three FM patients – that I normally wouldn't give it much weight. But the dramatic improvement in fatigue and pain levels experienced by all three participants piqued my interest.

Below are the results for each patient following 20 days of high-dose thiamine therapy:

Patient 1: 71.3% reduction in fatigue; 80% reduction in pain.

Patient 2: 37% reduction in fatigue; 50% reduction in pain.

Patient 3: 60.7% reduction in fatigue; 60% reduction in pain.

Wanting to know more, I contacted the lead author, Dr. Antonio Costantini. I learned that in addition to the fibromyalgia study, the same group of researchers had also been studying the use of high-dose thiamine (also known as vitamin B-1) for several other diseases in which fatigue was a significant factor (including ME/CFS) – all with similarly impressive results.

The Story Behind the Research

In June 2010, Dr. Costantini and his associates noticed that the fatigue and related disorders in patients with ulcerative colitis improved after therapy with high doses of thiamine. From that they formulated an hypothesis: “Chronic fatigue that accompanies inflammatory and autoimmune diseases could be the clinical manifestation of a mild thiamine deficiency, probably due to a dysfunction of the intracellular transport or due to enzymatic abnormalities, and responds favourably to high doses of thiamine.”

The study authors stated, “From that moment, we systematically searched for and treated with high doses of thiamine chronic fatigue, when present, in any type of disease.” Not surprisingly, one of the diseases they decided to test this therapy on was fibromyalgia, since fatigue is a major symptom for most people with FM.

While researching the scientific literature on thiamine and FM, they came across a 1998 study that stated, “A number of similarities exist between Fibromyalgia and thiamine deficiency. They include irritability, frequent headaches, unusual fatigue, muscle tenderness upon pressure palpitation, muscular weakness, irritable bowel syndrome and sleep disturbance. Studies published in JACN [Journal of the American College of Nutrition] have demonstrated abnormalities of thiamine metabolism in FM.”

Learning More About Thiamine

By the time I finished reading through several of the high-dose thiamine studies Dr. Costantini sent me, I knew I wanted to try it out for myself. But since the dose was so high, I wanted to be sure it was safe. After all, thiamine is not a nutrient we typically hear much about. In fact, until reading these studies, I knew nothing about thiamine except that it existed and was usually included in multivitamins as part of the B-complex.

So I began doing some research and here's what I learned about thiamine:

Thiamine is another name for vitamin B-1.

It can be spelled as thiamine or thiamin. The final “e” is optional.

Thiamine is an essential nutrient, meaning our bodies do not make it so we must get it from the foods we eat and/or supplementation.

Dietary sources of thiamine include legumes, beef and pork, Brewer's yeast, whole-grain breads and cereals, oatmeal, rice bran and wheat germ, milk, nuts, seeds and oranges. When it comes to grains, it's important to eat whole grains because thiamine is found mostly in the outer layers of the grain and in the germ, both of which are removed during the refining process.

Thiamine is important for a variety of bodily functions, including nervous system and muscle functioning, carbohydrate metabolism, healthy digestion and more.

A severe thiamine deficiency results in a condition known as beriberi, which can be fatal if left untreated.

Up until now, thiamine deficiency was thought to occur most often in alcoholics, the elderly, people with malabsorption syndromes and people on kidney dialysis. However, newer studies are beginning to show that a mild thiamine deficiency may be more prevalent than once thought.

Thiamine is considered safe and nontoxic, even at high doses. Few side effects have been reported. Although no side effects were seen in the fibromyalgia study, a few people in other high-dose thiamine studies did report side effects like insomnia and tachycardia.

Interestingly, when given a blood test, many of the people in these studies had normal blood concentrations of thiamine, yet they experienced significant symptom improvement when taking high doses of thiamine. The study authors speculate that this “may indicate a dysfunction of intracellular thiamine transport or structural enzymatic abnormalities.”

My Personal Experiment with High-Dose Thiamine

Once I was convinced that thiamine would be relatively safe for me to try, I decided to follow the basic protocol used in the fibromyalgia study. Those patients started at 600 mg/day and increased the dosage by 300 mg every three days until they reached a therapeutic dose. (It can take up to 48 hours to experience the effects from an increased dose of thiamine.)

The first patient reported dramatic improvement at 600 mg. The other two did not experience any changes until they reached a dose of 1500 mg. The final therapeutic dose for both was 1800 mg, at which time they reported an abrupt improvement.

Since I couldn't find thiamine in 300 mg tablets, I worked in 500 mg increments. Within 24 hours of taking my first 1500 mg dose, I noticed a huge increase in my energy level. I then tried taking 2000 mg to see if it made even more of a difference, but I actually felt a little worse, so I dropped back to 1500 mg/day and have remained there ever since.

I can honestly say that my energy level now is much, much better than it has been in 24 years!

By the third day after starting the 1500 mg dose, I almost bounced from one activity to another and kept thinking, “I feel so good! What can I do next?”

While I can't say I've also experienced the same reduction in pain as the study participants, I'm hopeful that will come in time. But even if it doesn't, I'm thrilled with my increased energy! It's a lot easier to cope with pain when you have the energy to move around and be more active.

Need-To-Know Information About Thiamine

Following are a few additional pieces of information that are important to know about thiamine deficiency and supplementation:

Thiamine is water-soluble and can be taken with or without food.

Drugs, such as antacids, barbiturates, diuretics, alcohol and tobacco may decrease the body's ability to absorb thiamine properly.

Betel nuts and horsetail supplements cause a chemical interaction with thiamine that can damage its ability to work.

Eating raw seafood or drinking large amounts of coffee and tea can destroy thiamine's effectiveness.

If you are pregnant, may become pregnant, or are breastfeeding, consult your health care professional before taking thiamine supplements.

Diabetics are typically deficient in thiamine. However, Dr. Costantini cautions that diabetics should keep a close eye on their blood glucose levels while taking high doses of thiamine because he has seen a couple of people whose glucose levels have gone up. Benfotiamine is a synthetic form of thiamine that seems to be particularly effective for diabetes.

I have just read this ladies experience with taking thiamine and I must say that I feel very enthusiast about the article and her experience.Iam very keen to try natural supplements and Iam going to give it a try for myself.

I've been told Fibromyalgia ISN'T a disease of inflammation and ISN'T autoimmune related, but instead is from an overactive central nervous system. So now i'm a bit confused--if this vitamin B1 helps with inflammation and autoimmune conditions, and works with fibromyalgia, then IS fibro an inflammatory and autoimmune condition? My rheumatologist says it isn't.

An overactive nervous system does not mean very much. There is a "central sensitization" theory meaning that that nociception (the perception of pain)is elevated. However many people with FM are not more sensitive to normally applied pain stimuli, in fact some are actually less sensitive when compared to non-FM controls. Indeed some are more sensitive. This tells us that heightened nociception is not the key to FM.

Anyone who says that Fm is not an infallamtory disorder has not read the literature of research. Clearly the cause of the condition is not known but the evidence for FM being a symptom set of an underlying neuro-inflammatory disease is quite strong.

Firstly substance P is a neuro-inflammatory protein which acts on the neurokinin-1 receptor. Substance P is highly elevated in FM as it is in other neuro-inflammatory conditions. (Some say substance P is a pain elevator but there is no evidence for this idea).

Vasoactive neuropeptides act as hormones, neurotransmitters, immune modulators and neurotrophes. They are readily catalysed to small peptide fragments. They and their binding sites are immunogenic and are known to be associated with a range of autoimmune conditions. They have a vital role in maintaining vascular flow in organs, and in thermoregulation, memory and concentration.

Recent studies have shown a significant vasoactive problem in FM and many do have peripheral neuropathy which in many cases has been shown to be the result of arterial shunting. This shunting is dysfunctional in FM and hard to explain without involving the neuropeptides and other cytokines such IL-1.

While visual signs of inflammation are mostly absent, the immune inflammatory system is upregulated. Anyone saying that FM does not involve inflammation must go back and study more immunology.

It is also known that people with spinal injury and stenosis often suffer from FM. Such people have raised levels of these vasoactive peptides. Basically the damage or pressure on the spinal nerves is causing an immune system involvement.

Bare in mind also, that 40-45% of people with ME/CFS meet the standard criteria for FM. The imune markers of ME/CFS are becoming clearer by the day.

The studies of Prof. Alan Light and others have clearly shown that during exercise, people with FM have significantly elevated immune system markers for many hours, even days after the exercise compared to non Fm controls.

Hence FM is not really a disease, it is a symptom set of an underlying disease which varies from person to person. There is obviously genetic factors but genetic factors does not = disease. In one sense FM is state of immune system attack on neuro-muscular and neuro-vascular tissue but whether that means it is auto-immune is not known.

Question on Dosing

Posted by: ShannahJul 5, 2013

Is the dosing split up during the course of the day or taken all at once?

I've been taking the 1500 mg all at once. The study didn't mention splitting it up so I went on the assumption that it was once a day. It works very well for me this way and I haven't had any negative side effects. – Karen Lee

After reading @ B-1 I took 4-395mg capsules at 3pm Sat and woke up Sun feeling the absolute best in 2- 3 years! Like someone turned the lights on. I had so much energy and motivation, it was fantastic! I took another 4 caps @ 395mg and felt tired today. My body wasn't used to the exertion and I was tired, but normal tired, not crashed. I did cut back to 3-395mg today to see if I feel better tomorrow.I did feel fuzzy brain today, but very exciting to have some energy. Thanks for the info.

The dosage should be split up throughout the day as your body can only use so much of the B1 and the rest of it will be flushed out in your urine. By doing three or four smaller doses throughout the day your body will use much more of the B1.

I have suffered Hell's flames through CFS/ME/FMA since 1986. I Have Just tried "Sea Buckthorne",recommended by a homeopathy book,which is expensive (by the standards of someone who's just staying alive on State Benefits),And Didn't work,sadly.
- I'm Trying a Lot of food supplements as well,such as 'green tea' & sea-kelp and brazil nuts and almonds & Glucosamine sulphate & Omega 3 capsules (which Havn't Noticably worked,either),
So, I'm going to Try (Very soon) 15,000mg's of Vit B1 (Thiamine) per day,starting in Approx 4 Days.... I'm Going to have a word about the matter with My GP,in approx 4 day's,Too...........
- Lets Hope its NOT even More wasted £££.

Hi Tiredchris – I'd like to clarify that 1,500 mg of B-1 was the dose that worked best for me but different people seem to respond better to different doses. For example, the lady in the study who experienced the greatest improvement only needed 600 mg, while the other two ladies did best at 1,800 mg. My best suggestion would be to start at 500 mg for two days and increase it as needed every two days until you notice a difference. The reason for waiting two days to increase the dose is because it can take up to 48 hrs. to see an effect with B-1. I sincerely hope it works for you as well as it has for me. – Karen Lee

I took on average,1,800mgs of Thiamine (B1) for 21 day's,and I might as well as taken 1,800 chocolate drops...... :( - I am VERY short of money. I Shan't be buying Any other food supplements that Any other person recommends on here.... :( - Some of us dont have money to burn,especially with world nergy & water prices being as high as what they are,and State Benefits being as low as they are..... :( Good luck to You All....

Thanks for B1 information

Posted by: CoachmeJul 25, 2013

I just got my shipment of thiamine in. I am looking forward to trying it. Fingers crossed. I admit I am cautious because I have been sick a long time and I have tried multiple supplements to no avail. However after reading more about this I think it is definitely worth trying. Thank you so much for providing the information. I noticed Health Rising is doing a survey of those trying it so if you try it please fill out the survey.

I've been using B1 since I found your article (and did a bit of research).

I am having relatively good results with:

2000 mg. (1500 am, 500 pm) of B1 PLUS
300 mg. (150 am, 150 pm) of benfotiamine (the fat-soluble form of B1). Solgar for the B1 and Source Naturals for the benfotiamine.

I have at least 20% more energy, and, since I added the benfotiamine, a huge decline in muscle pain.

I want to know why it works, how to stay connected, long term problems (if any), whether it is still working for you (some people I know using it have reported it stopped working) - in other words, everything.

This is the first time in 24 years I have any kind of hope - and any kind of significant improvement.

I started in mid-July and have worked myself up, 250 mg a day, 3 days for each new level.

Do you know of/should we start a data-gathering group? I am keeping very detailed notes - and won't increase any more for now.

Note: I have CFS - but not FM. And the CFS pain has been reasonably-well controlled with Celebrex (200 mg twice a day) for years - but now I can even see reducing that dose.

Thank you for sharing your story. I have CFS and fibromyalgia. Vitamin B-1 has helped me tremendously. Unfortunately I may have run across a snag. I have had hives on my legs for the past 6 weeks. They showed up about 10 days after I started the B-1 protocol (1500 mg).

I originally thought I was having an allergic reaction to swimming in a lake. But the hives have not resolved. My doctor doesn't know what to do.

I was wondering if you could give me the contact information for Dr. Constantini so I could ask him if he has seen anything like that? I sure would hate to give up this therapy. It has changed the quality of my life.

I'm so glad to hear B-1 has helped you but sorry to hear about the hives. I sure hope it's not the B-1 since it's helping you so much.

You can get Dr. Constantini's e-mail address from the abstract of his study on PubMed. Here's the URL for the abstract: http://www.ncbi.nlm.nih.gov/pubmed/23696141

I hope he's able to help you.

Karen

Low thyroid and B-1

Posted by: lynnwannaflySep 14, 2013

I think I may have found the answer to the hives after doing the high dose B-1 protocol. I contacted Dr. Constantini and he replied that he has not seen any hives in the patients that he has worked with.

So I googled my medications with the word hives. It turns out there is a lot of talk about curing chronic hives with thyroid hormone. Then on googling more, it turns out that one of the side affects of thiamine is to lower thyroid production.

Voila!

I am hypothyroid and take armour thyroid. My doctor upped my dose yesterday and I think things are going back to normal for me. I am having another good day and think that the thiamine may have changed my whole life. Woo-Hoo!

If you haven't looked into this yet. I would highly recommend it as a low risk - possible high gain treatment.

Karen, or anyone - can you tell me what the status is with Thiamin treatment? Is anyone doing a larger trial? Is the Thiamin still working for you??
I ordered my Thiamin, but have to wait a week - it is on back-order. I am not very well-connected, but I don't understand why I haven't read more about this.
Thank you :)

The Italian research team is continuing to study the use of thiamin to successfully treat the fatigue that accompanies a number of diseases – most recently inflammatory bowel disease and Hashimoto's thyroiditis. As far as I know, they are the only ones doing this type of research. I suspect the reason you haven't heard more about it is that these are still very small initial studies. I hope eventually they will be able to expand their research to double-blind studies with more participants.

Yes, the thiamin is still working very well for me. I have recently been able to lower my dosage from 1500 mg/day to 1250 mg/day with no decrease in energy. – Karen Lee Richards

The Source Naturals Thiamine contains a significant amount of magnesium. Magnesium helps me greatly with pain and energy; I would probably rank it the third most important supplements I take, after lipoceutical glutathione and Ubiquinol.
Is it possible that some of the improvement folks are experiencing is due to the magnesium?

Well, after reading this article yesterday I have decided to take the plunge and start on this extra-dose vitamin, could only get 500mg but will wait three/four days between any change and see what happens - willing to try anything to get my energy back

Karen-I'm taking 2000 mg a day with no noticeable increase in energy. I'm wondering about the NADH you mentioned. Hate to increase the B1 anymore, taking so many supplements, It makes me wonder what is working and what's not! I lost your email, but if you see this, please answer :)

Reply to lwallace929

Posted by: katkarApr 4, 2014

lwallace929 – I know what you mean about taking so many supplements you're not sure what's working. I try to add new supplements one at a time so I can better tell if it's helping. I've been taking the NADH for quite awhile now. I started it mainly because Rich so strongly recommended it. I didn't really think it was doing that much until I stopped taking it. A couple of weeks after I stopped, the fatigue got quite a bit worse so I quickly ordered it again and am now careful not to run out.

On the B-1, are you taking the Source Naturals brand? The reason I ask is that it also contains 100 mg. of magnesium. Apparently thiamine doesn't work well without sufficient magnesium. When our Source Naturals brand was on backorder, I tried a different brand that didn't have the magnesium in it and I could tell a big difference.

The supplement combo I take for energy each day is Ubiquinol CoQ10 - 600 mg., NADH - 12.5 mg., and B-1 with magnesium - 1500 mg. That combo seems to work well for me. I no longer feel so drained that I have trouble even dragging myself out of bed. I'm actually functioning pretty well most of the time. I hope you're able to find a combo that works as well for you! – Karen

Perhaps one of the reasons that patients are requiring varying high dosages of thiamine in order to be effective, is that they might be eating food that contain or are contaminated with anti-thiamine factors.

Also molds found in cereal grains, including wheat and corn and their by-products contain strong thiaminase enzymes. And another reference noted that "thiaminase enzymes are most often 'found in colored plants'...'the anti-thiamine activity is bound to phenolic compounds'. So perhaps if one eats a lot of foods high in salicylates and/or phenols, then it may be helpful to avoid some of those foods.

Finally, Dr. Derrick Lonsdale M.D., considered by many to be the country's authority on thiamine, found that if he gave high-dose thiamine for several months to a year, that it caused some of his patients to develop deficiencies in folate and B12.

Time of day, with meals and other supplements

Posted by: PemiJan 4, 2015

Hi, I've been working with lots of supplements, exercise and cutting out SUGAR and wheat for a court me of years and it's worked well but have had a relapse due to a serious ankle injury 6 months ago which has stopped me exercising. I kind of gave up on everything.
I was excited to see this experiment but I have a few questions.
I can only buy B1 in 100 mg increments and magnesium in 250 mg. I took 3 B1 and mag at lunch today but can these be mixed in with all the other supplements I take?
Also Mag is synonymous with sleeping ( I take it at night with calcium, zinc, potassium so will I be getting too much mag ?
I'm confused.
Thanks

Gave this a shot about 4 weeks ago and within 3 days I was honestly symptom free!!! 1000mg did the trick for me. Was at the level where I was just able work from home, but the pain and fatigue ruled out any other activities. Having suffered for 14 years, I've tried NADH, DHEA and gone through several ups and downs. NOTHING comes close to what this has done. ProHealth you have got to push for research to confirm this.. it may be the secret weapon.

(Note: I do also take ubiquinol CoQ10, hydroxytyrosol, curcumin, magnesium and a multivariate, but it wasn't until I added Thiamin that my life returned to preCFS levels)

Exercise still required.... This put my symptoms in remission, but it did NOT miraculously undo years of physical activity. I am still an out of shape, slightly overweight middle aged woman who's going to have to exercise her way back into decent shape :(

Flu.... Came down with the flu last week and it still hit me like a ton of bricks, immune system flared up, hurt from head to toe, but that only kept me down for 4 days, used to be 2 week minimum.

Thiamin Potassium

Posted by: liverockApr 11, 2015

High Thiamin levels can lower potassium levels which can be dangerous for those with beriberiheart disease,hypertension,,diabetes and rheumatoid arthritis. Checking potassium levels is advised.

http://charles_w.tripod.com/kandthiamin.html

Too much Thiamin can also be bad for for cancer patients as it can rapidly increase cell proliferation.

A good friend of mine sent me the link for the above article and I found it very interesting, thank you.

I haven't got fibromyalgia, but have thyroid issues and self treating with diet and recommended supplements. I have seen an improvement, but continue to be plagued by the lack of energy and find this frustrating and irritating. I also get a lot of headaches, which are historical, irritability and insomnia amongst other symptoms.

I will add Thiamine into the mix and monitor any improvement while continuing on the regime I have gotten used to. It has given me hope that things will improve over time.

I had to stop working at the young age of 48yrs young, two weeks after I was told that I have Fybro, I got Diabetees . My diabetees has mostly been under control, just once in a while it will get into the 7 or 8 but I have not had any energy either I have a very hard time even getting out of bed

I would like to ask the Author if this is still working for her. Have u had to make any dose adjustments. Did it work long term? I had significant improvement for the first 3 weeks at 1500 mg per day but it has stopped working

has anyone had VitB1 checked after following regimen for 3-6 months
Mine was a bit high so stopped but it did seem to give me energy while on it - has anyone had worsened brain fog after 6 month use?
Also just to add to possible remedy - have been taking Dribose 10mg every 4 hours up to 3 times a day with moderate improvement with energy approx 1-2 weeks after starting - NOTE recommended to take with food as can decrease BS - worth researching - Rec in research are 5-30g throughout the day for CFS/ Fibromyalgia pts
Also noted sig decline if missing a couple doses - and takes me 3-5 days consistently to get. Back the energy level

I use Solgar for most of my vitamins, including this one. They independently test all their products to ensure the contents are what is on the label. As you probably know, vitamins aren't regulated and many studies have shown that many brands don't actually contain what's on the label.

Chronic Lyme Disease

Posted by: n0016804May 4, 2017

Has anyone ever tried this high dose B1 produce for the fatigue of Chronic Lyme Disease. thank you

I've been trying this for the past few month and have really noticed a huge improvement in my energy and fatigue. Since a bottle of Solgar Thiamin costs about £18 for 90 tablets, I would suggest trying it. I started with a 500mg tablet for about 3 days, then added another for 3 days and went up to 3 tablets for another 3 days. I then tried adding a half tablet to get near the 'max' in the study, but found it didn't help anymore than 1500mg. So I'm now taking 1500mg daily.
I'm doing more than ever and not feeling it the next day. Definitely worth a try....